Congenital Heart Disease is the #1 birth defect in the United States, affecting one out of 120 babies born. The past 60 years have brought dramatic surgical and medical advances allowing more than 90% of these children to live into adulthood.

The result of these amazing medical triumphs is that for the first time in history there are more adults than children living with congenital heart disease (CHD) in the United States. These numbers are expected to keep growing by about 5% each year. It is estimated that there are approximately 1 million adults and 800,000 children in the U. S. with CHD and around 30,000 new diagnoses each year.

The health concerns of patients with adult congenital heart disease may be grouped into the following categories:

The uniquely wide spectrum of cardiac defects affects a complex population of patients that can be categorized by varying degrees of severity and prognosis. The American College of Cardiology Task Force 1 of the 32nd Bethesda Conference developed a classification schema to categorize patients according to the disease severity. There are three classes or categories: simple lesions, moderate lesions, and complex lesions (see Group 1, 2, 3 below) with recommendations for follow-up for each.

A major issue for these adults is the common misperception that these surgeries are "curative". The 32nd Bethesda Conference recommends that all survivors of congenital heart disease be seen at least once in adulthood by an Adult Congenital Heart Disease Center and most will require regular follow-up cardiac care. This is because most of these patients, with the exception of those with a ligated and divided ductus arteriosus, have been shown to be at risk of residua and sequelae.

In 2006, the National Heart, Lung and Blood Institute (NHLBI) Working Group on Research in Adult Congenital Heart Disease proposed that a systematic study network for Adult Congenital Heart Disease (ACHD) be established, similar to the NHLBI-funded Pediatric Heart Network. The NHLBI Working Group specifically recommended:

Developing technology to support hemodynamic and functional modeling of individual patients, to improve understanding of cardiac status and plan future therapy

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Providing consensus on training requirements

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Identify funding for clinical and research training that is needed to provide enough physicians to treat these patients

A major emphasis in the coming years will be the development of a national ACHD database to be the catalyst for hypothesis-driven research to advance the evidenced-based medical care for this unique and challenging population.

Group 1 Simple Heart Disease
These patients can usually be cared for in the general medical community